ALD Community Calendar

WorkGroup 4 Meeting

Please join your fellow ALD Patients, Families, and Advocates for the Monthly WorkGroup 4 Meeting to be held THURSDAY, MAY 20th, 2021 at 7-8pm EDT (UTC-4 Time). Bring your ideas and willingness to discover ways that we can work together to help advance our ALD community goals. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkycdzb3a043da

Details

Date:
May 20
Time:
7:00 pm - 8:00 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Bootcamp: Cerebral ALD

ALD Connect will be hosting four Bootcamps in 2021. Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehz9y6i6e3967965 Cerebral ALD Bootcamp (May 22, 2021) 11:00 AM Transplant 101: BMT and Gene Therapy 12:00 PM Session 2: Advanced cerebral ALD, support systems, palliative care team, etc. 1:00 PM Session 3: Life after leaving the hospital 101 & school support 2:00 PM Session…

Details

Date:
May 22
Time:
11:00 am - 4:00 pm

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

COMMUNITY CALL: SYMPTOMATIC WOMEN

Please join us for a community call on Monday, May 24th at 7 PM EDT for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkrrb8adb05f1e   **NOTE: Please do not register for this call unless you are a…

Details

Date:
May 24
Time:
7:00 pm - 8:00 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

COMMUNITY CALL: AMN MEN

Please join us for a community call facilitated by Ken Dieffenbach and Justin D’Agostino on Tuesday, May 25th at 7 PM EDT for AMN men. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkspwf06843dd0 **NOTE: Please do not register for this call unless you are a patient…

Details

Date:
May 25
Time:
7:00 pm - 8:00 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

COMMUNITY CALL: Newborn Screening, Young Families, Parents of Asymptomatic Children

Please join us for a community call facilitated by Tara Meady, Suzanne Flynn, and Kathleen O’Sullivan Fortin on Wednesday, May 26th at 7:30 PM EDT (UTC-4 Time) for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzktory4d53c2b8 **NOTE: Please do…

Details

Date:
May 26
Time:
7:30 pm - 8:30 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Tuesday, June 1st, 2021 at 3:30 PM Eastern Time (UTC-4 time) for pre-, post-, and non-transplanted families. Please note the time of this call differs from several past calls. Please reach out to [email protected] if you have any questions. Please register…

Details

Date:
June 1
Time:
3:30 pm - 4:30 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

llamada comunitaria en español

¡Únase a nosotros para una llamada comunitaria de ALD Connect en español! La llamada se llevará a cabo el 5 de junio a las 5 pm EDT (hora UTC-4) y será facilitada por Jean Cappello. Regístrese usando este enlace: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzl14src20c03a9 **No se registre para esta llamada a menos que sea un paciente o un cuidador.…

Details

Date:
June 5
Time:
5:00 pm - 6:00 pm
View Event Website

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Bootcamp: Men with AMN

ALD Connect will be hosting four Bootcamps in 2021. These will be half-day virtual meetings. Each will consist of four webinars and an Ask-the-Experts session. We are finalizing topics and presenters. More to come soon. Please save the date!

Details

Date:
June 12
Time:
11:00 am - 4:00 pm

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

Bootcamp: Women with ALD

ALD Connect will be hosting four Bootcamps in 2021. These will be half-day virtual meetings. Each will consist of four webinars and an Ask-the-Experts session. We are finalizing topics and presenters. More to come soon. Please save the date!

Details

Date:
August 7
Time:
11:00 am - 4:00 pm

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
View Organizer Website

2021 Outrun ALD Virtual 5K

X out ALD will host the 2nd annual Outrun ALD 5k on September 18th, 2021.  The 2021 Outrun ALD 5K will be virtual event once again this year. Outrun ALD raises funds for ALD research at the University of Minnesota's Leukodystrophy Center. Email [email protected] with questions. Follow X out ALD on Facebook and Instagram or visit our…

Details

Date:
September 18

Organizer

X out ALD
Email:
xoutald@gmail.com
View Organizer Website

Knockout ALD: Run for ALD, Cure the Boys (5K/1 mile)

Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year's event will be in person and virtual, on November 20, 2021. Email Julie at [email protected] with questions.

Details

Date:
November 20
Time:
9:00 am - 12:00 pm
View Event Website

Organizer

Knockout ALD
Email:
RunforALD@yahoo.com
View Organizer Website

If you would like to add an event to the ALD Community Calendar, please email your event details [email protected] Please include the name of the event, description, and contact information. Thank you!